Ben Walton was an honours psychology student, accomplished pianist and trombone player. He was healthy, fit, did not smoke, drank moderately and had excellent oral hygiene. He’d had a good diet from early childhood.

In summer 1994, he felt run down, had pains in his neck and shoulders and a mouth ulcer on the side of his tongue. Over the next few months things worsened. That December, he saw an oral and maxillofacial surgeon, and a diagnosis of squamous cell carcinoma of the tongue, at a late stage, was given. Almost a year later, despite some temporary periods of remission, Ben died.

“Ben had a remarkable attitude toward the disease,” said his father, Mike. “Sitting at his bedside one day, he said ‘Something has to be done about this’. After he passed away, we set up The Ben Walton Trust in his honour.”

Looking back on the 21 years since then, Mike acknowledges that a lot has been achieved, but he says much still has to be done.

“Back then, ‘head and neck’ wasn’t a discrete subject area and mouth cancer was treated by a variety of specialists. There was poor professional and public information about the disease and little good news to shout about – approximately 50 per cent of sufferers do not survive five years after contraction.

“And it seemed the patient was always to blame. The general feeling was that if you contracted the disease you’d done something wrong – smoked or drank too much – and therefore it was your fault.

“We wanted to create awareness, encourage and support research, support people in palliative care, remove blame and get the message over that almost anyone could contract this disease.”

Working with a range of individuals and institutions, he believes progress has been made toward meeting those goals.
“We are moving towards a situation where dentists are regarded as specialists in the mouth and there is a discipline of ‘head and neck’ – that has helped a lot. When Ben was ill an ‘urgent’ referral was 16 weeks, and that time has been drastically reduced.

“Awareness among professionals has improved enormously, and there are efforts, such as Mouth Cancer Action Month, to increase public awareness.”

Breakthrough

One of the Trust’s first breakthroughs came when Mike had a meeting with Professor Newell Johnson of King’s College, London. It led, in 1997, to the employment of a part time researcher. Notably, she was the first person to get councils in England to compile cancer statistics on a like for like basis – previously they’d kept them in different formats, making comparisons and research difficult. The researcher’s work also led to the ‘King’s study’. This looked at a group of patients aged under 45 who had contracted mouth cancer and found that in 25 per cent of cases alcohol or tobacco were not causal factors. “That was an important development,” said Mike, “because it helped change the way patients are regarded. It also highlighted that the disease was no respecter of age or sex, almost anyone could contract the disease.”

In 2000, working with PR professional Richard Horner, the Trust established the Scottish Oral Cancer Action Group, which helped bring together leading figures in Scotland. Mike believes the Group helped prompt two major developments. First, Richard set up Mouth Cancer Action Week (it would later become a month-long event) which helped generate a great deal of publicity. Meanwhile, the Group gave a presentation at the newly formed Scottish Parliament and subsequently held a meeting with the then Health Minister, Malcolm Chisholm. Soon after, free dental checks were re-introduced in Scotland. Dentists began, as standard practice, to carry out routine full oral mucosa checks.

“Although the Scottish Oral Cancer Action Group did not continue, it proved to be a good and vital thing,” Mike said.

Other positive developments he cited include the establishment of managed ‘head and neck’ clinical networks such as SCAN in Scotland, and the creation of a SIGN (Scottish Intercollegiate Guidelines Network) guideline covering the topic, on which Mike served as a patients’ representative.

“A surprising success,” he added, “has been the online module we created with BMJ Learning. Academics sympathetic to our cause, such as Professors Graham Ogden at Dundee, Kasturi Warnakulasuriya at King’s College, London and Paul Speight at the University of Sheffield developed the content. The international success of the module has exceeded our wildest dreams.”

Mike lauded the backing the Trust has received from dentists and dental students. “We have been supported by FGDP (Faculty of General Dental Practitioners (Scotland)) and the British Society of Dental Hygienists and Therapists, and many practices have raised significant sums for us during Mouth Cancer Action Month.

“Our work with dental students started with Professor Graham Ogden, who has always been passionate about trying to improve services for mouth cancer. His students picked up on his enthusiasm and have supported us for many years, raising substantial sums of money along the way.”

That willingness to help has spread and numerous dental schools, such as Glasgow, Manchester, Leeds, Sheffield, and UCLAN (University of Central Lancashire) take part in Mouth Cancer Action Month.

More to do

Although there have been significant achievements by the Trust and others, Mike is clear that there remains a lot to do.

“The level of treatment patients can expect still depends to some extent on their location, the knowledge base of the professionals involved and how rapidly they get referred. And we still don’t fully understand the disease and its causes.”

While praising both the medical services in Scotland and the Scottish Parliament, he is wary that gains made could be lost. “One of the best things to have happened in recent times has been the introduction of target waiting times. I was horrified to hear the other morning on the news that GPs are going to be offered more cash not to refer people to specialists. That’s going backwards.”

Though his experience of the Scottish Parliament has been positive, he realises that when it comes to influencing political priorities it is often that those who have the means to shout loudest get the most attention.

“My biggest fear is that achievements we have made will erode through lack of resources.”

He explained that there was never an aim to be a wealthy charity; influencing people and increasing awareness have always been the priorities.

“Of course you need cash to support projects. Fortunately, we’ve always managed to find money one way or another. We know that donations we do receive must be carefully shepherded. We have always been frugal and tried to be sensible. We’ve been very lucky – people have given us their time and expertise without expecting payment in return.”

He thinks it’s been useful not being a medic or scientist. It has allowed him to come at things from a different viewpoint, and not be bound by convention. You can achieve a lot with a small group of people who are motivated and dedicated.

Looking forward, on the immediate horizon is the global oral cancer forum, which will take place in New York in March 2016. Mike will be a panel member on this long awaited event which will bring together many of the international specialists in mouth cancer looking at how to progress early diagnosis and prevention.

In the longer term, Mike’s aim is for the Trust to be self sustaining. “I have looked at the prospect of who carries on the work when I’m not here and it’s very difficult to find somebody with the time to do it.” He believes there will be enough synergy from what has been done so far for activity to keep going. And he is hoping there will be continuing pressure on governments and their agencies. In particular, he pointed to a well informed and passionate debate about mouth cancer that took place in Westminster around four years ago. “Since then not a lot has happened, and we need further action.”

When asked what his much loved and much missed son would say about his efforts, Mike answered: “Ben would probably say something simple like ‘Well done; I’m pleased with what you’ve achieved.’

“But it’s all been about honouring him and his terrific courage. We were normal middle class people who hadn’t thought much about the issue and hadn’t seen other people’s realities. When your eyes are opened you realise just what some people have to go through, and you witness their bravery and strength.

“I hope people feel that the topic of mouth cancer is slightly less neglected than it was. It’s still in the shadows, but slowly coming out, thanks, in large part, to the dental profession.”

Month of action

Every November, the British Dental Health Foundation (BDHF) organises and runs Mouth Cancer Action Month, under the message ‘if in doubt, get checked out’. The campaign has become an influential springboard in educating the public about mouth cancer, highlighting the risks, symptoms and causes of the disease.

The campaign is about taking action and raising awareness, particularly among those groups who are most at risk. The charity want people to look out for ulcers that do not heal within three weeks, red and white patches in the mouth, and unusual lumps or swellings while encouraging them to regularly visit a dentist to ensure they’re checked for signs of mouth cancer.

By working closely with the dental and health profession and supporting them in their activities to patients and local communities, the BDHF continues to increase mouth cancer awareness and save lives through early detection.

Mouth Cancer Action Month is sponsored by Denplan and also supported by Dentists’ Provident, plus a number of other professional and commercial partners including Dental Update.

Royal recognition

Before devoting himself to the Trust, Mike Walton was a director of first year studies at Edinburgh College of Art. Thanks to the work he has carried out, in December he will be presented with an MBE at Buckingham Palace. “It is recognition for all the people who have done quizzes, held coffee mornings, run marathons, opened their gardens and so on to raise money and support our work. I’ll be proud to accept it on their behalf, and on behalf of all the patients who have suffered from this cruel disease.”

Mouth cancer facts and figures

Mouth cancers are more common in people over 40, particularly men. However, research has shown that mouth cancer is becoming more common in younger patients and in women. In the last year 6,767 have been diagnosed with mouth cancer in the UK – an increase of more than a third compared to a decade ago.

Sadly, more than 1,800 people in the UK lose their life to mouth cancer every year. Many of these deaths could be prevented if the cancer was caught early enough. As it is, people with mouth cancer are more likely to die than those having cervical cancer or melanoma skin cancer.

Mouth cancer may affect anybody but many cases are linked to lifestyle choices and certain risk factors increase your chances of developing the disease. These risk factors include:

Smoking: The leading cause of mouth cancer, tobacco transforms saliva into a deadly cocktail that damages cells in the mouth and can turn them cancerous.

Alcohol: Excessive use is linked to more than a third of mouth cancer cases in men and a fifth in women. Heavy drinkers and smokers are up to 35 times more at risk.

HPV: A sexually transmitted virus which experts suggest could rival tobacco and alcohol as a leading risk factor within 10 years. Those with multiple sexual partners are more at risk.

Diet: New research has suggested that there is a noticeable risk reduction for mouth cancer with each additional daily serving of fruit or vegetables. A healthy, balanced diet is vital.

Smokeless tobacco: Although some people believe this type of tobacco is safer than smoking, the reality is that it is much more dangerous. The types of smokeless tobacco products most used in the UK often contain a mix of ingredients including slaked lime, betel (or areca) nut and spices, flavourings and sweeteners.

More Info

For further information please register your details at www.mouthcancer.org and www.mouthcancerfoundation.org